“Mama, do you think I will get a shoe?” Cleo asked as we were making our plans for the Muses parade. I had been told by so many people that the Muses parade was THEE parade that I certainly did not want to miss, so despite my apprehension of navigating around the city at night, without my husband, in an area unfamiliar to me, I knew that this was the one thing I needed to do if I did nothing else for Mardi Gras.

“I don’t know, baby, maybe!”

“Mom, you said baby and maybe and they rhyme. Are you trying to be a rapper?”

“Yes. I am MC Hurry-UP- Let’s-Get-Ready-to-go,” I said, giving Cleo the look I promised I would never give, the same look my mom gave me and the exact same look I had seen my Grandma Bea give my mom.

We put on her dress and her wings and she asked for some make up, a night to play dress up and receive gifts from the gods for her and a night to challenge myself and the fears I had developed for me.

We arrived a couple hours early, setting up a picinic, me reading Augsten Burroughs, her reading Captain Crankypants or Underpants or whatever it is that she devours and laughs and tries to mock the pictures of. She spread out on the blanket, her head on my lap, me caressing her hair, her looking up at me and smiling. A Kodak pictures in our mind that we never will forget.

It was finally time for the parade to start and she took it all in, waiting and waiting. She caught bead after bead, refusing to place some on her neck, partly due to being weighed down and partly due to wanting to share with her mom. It was our night, My Girls’ Night, and I was spending it with one of my favorite girls.

The parade came to an abrupt stop and we sat down, waiting to see what had happened. We had struck up conversations with the people next to us, an older couple visiting from Michigan. We talked about the Mid-West, about New Orleans, and about the transition of moving down here. They chatted with Cleo about books and art. After forty-five minutes and the temp dropping, we decided to head home. The parade was still stopped with no start in sight. We walked the half block to the parades beginning intersection when we saw movement, so we quickly ran back to our spot, and thankfully the Michigan couple welcomed us in, vowing for our previous parade placement when a couple of college kids became upset that they were going to have to compete with a child for beads.

Cleo held her sign up high as each float passed by.

One of the women on the top of one float pointed at Cleo, making eye contact with me, and tossed down to me the coveted Muses prize, a hand decorated shoe. These shoes are hot commodities, with women of all ages holding signs asking for the shoes to be gifted by a generous rider. Cleo’s eyes lit up bright, she gave me a thumbs up, and screamed, “YES!”

“Mama, we can go home now! I got a shoe!!!” she said, jumping up and down.

“Let’s watch the rest of the parade and then we will go home, Ok?”

“Deal!”

We repeated the same routine as each float passed by. Cleo received a few stuffed animals, which made her happy since next to just about anything, stuffed animals are her favoritest thing in the world. She has a trunk full of Bratz dolls that go unplayed with, but her stuffed animals have homes made from cardboard boxes with Cleo’s artistic flair added.

And then another lady signaled to me. Another shoe, this one orange in color – Cleo’s new favorite color.

More beads. More stuffed animals. More smiles. More laughs.

“Does she have an octo yet?” asked the little boy near us.

“No, she doesn’t.”

“She can have this, “he said, handing it to her, causing both of them to laugh, smile, and blush.

And at last, the last float of the parade. Cleo did her same routine, jumping up and down, holding up her sign, screaming, “Throw me something Missus!”

The eye contact came. Along with another shoe. The light in Cleo’s eyes was so bright. In that moment, she was so happy. The difficulties that she faced this past year were erased all she felt was pure joy. Mama’s heart was smiling.

“I need to make sure I bring one of my shoes to Miss Elizabeth,” Cleo said.

And that did it. In the middle of the lights and the crowd and the Mardi Gras joyfulness, I broke down in tears, looking at my daughter, with such a big heart and so considerate of others. That’s my girl.

The next day, we took the shoe that Cleo picked out for Miss Elizabeth over to her bookshop. We took the other shoe to Cleo’s Miss Ellen, the woman who has worked miracles in Cleo’s life. The remaining shoe is proudly displayed on her bookshelf, so she “never forgets our best date out”, next to her Octo and her Elvis scarf she was pinned with by one of the motor scootering Elvi.

This is the Mardi Gras I chose to remember. This is the Mardi Gras that should be reported on NBC, ABC, and whichever other national channel that wants to mar not only Mardi Gras, but New Orleans – a city that is trying to do the best that it can with what it has. A city that care may have forgotten, but not a city that has forgotten to care.

This afternoon at 3:30, my family packed up the car and headed to Magazine St. to park the car and have a picnic while we waited for that night’s festivities to begin. This is our first Mardi Gras and. unfortunately, my husband has to work for much of Mardi Gras in the French Quarter, so this was really our only chance to spend Mardi Gras together as a family. It was one of those special days that create memories that you will always carry with you, sharing the story with your children’s children, and with anyone else that will lend you an ear to listen.

Cleo and I spread our blanket out, brought out books we were reading, and spend our time basking in the beautiful February New Orleans sun, watching as preparation for the festivies began. People walked passed us, wishing us a Happy Mardi Gras, and police officers made small talk as they were preparing to take their stations for the parade. We watched as people made their way up Magazine Street, returning to their homes from work or driving to meet up with friends to partake in the Mardi Gras celeration together. My husband wandered around Magazine Street, looking for a Daquari chain for me, with no such luck.

People next to us, a man named John, was up from Belle Chase with his two boys, Logan and Joshua. Cleo joined the two in a game of catch. He offered made small talk, shared his experiences of living in Southern Louisiana his whole life. Emily met another little girl and they played sidewalk games together, dancing around the cracks that are infamous in the New Orleans sidewalks and playing an impromptu game of hop scotch without the traditional number grid. The parade began and we watched in anticipation, Cleo holding up her sign declaring herself a novice minion of the Krewe D’ Etat, hoping to get something that lit up the night sky in alternating flashes of light.

As D’Etat reached their mid-parade point, we met a couple named Karen and Dave, who split their time between Colorado and Louisiana. Dave and Karen split their time between Louisiana and Colorado. We shared with them that it was our first Mardi Gras, told them about moving from Wisconsin to New Orleans, and talked about Cleo. Karen and Dave were so full of life, welcoming us into their Mardi Gras experience. Karen held up Cleo’s sign that declared it was her first Mardi Gras. As the floats passed by, we would make as much noise as possible and before you knew it, Cleo had learned the coordination needed to catch the beads. Dave gave Cleo some beads, telling her that if a boy gives you beads, you need to give him a kiss. Cleo got a kick out of that, and gave Dave a kiss on the cheek.

During our time at the parade with Karen and Dave, I forgot about how much pain I was in earlier in the day. I forgot about everything I was worried about just a few hours earlier. I forgot about what I was doing this time last year and just how difficult the year had been, one plagued with disturbing revelations, familial drama, and the lethal combination of worry and stress. Karen and Dave showed us what being a New Orleanian really is about. They laughed, they smiled, they enjoyed life. They didn’t just enjoy life, they really lived life. Their kindness, not only to Cleo, but to The Viking and I, was unbelievable. I felt so fortunate, so lucky, to have had this experience – an experience that came after dealing with rudeness and greediness – to instill in our whole family is that looking out for one another is what New Orleanians do, more so here than any other place, because the people here in New Orleans have learned what the important things are, and how to be grateful for the blessings they have, not angry about those things that they don’t.

The Viking works the rest of Mardi Gras. Today we are taking a much needed break away from the parades and festivites. Tomorrow we may meet up with Dave and Karen again. Whether we do or not, they really presented us with an amazing gift. Thank you, Dave and Karen, for showing us what carnival season really is about.

“What can I do to help?” my husband asks me, seeing exactly how much pain I am in when I attempt to walk from the couch that I have made my home to the bathroom, five feet away.

“Take me out back and put me out of my misery, ” I respond, thinking of how we took care of ailing livestock back on the farm in Wisconsin.

“Besides that?”

“There is nothing you can do, honey, just help me.”

Unfortunately, in my life, this exchange takes place quite frequently. Sometimes it takes place daily, sometimes weekly, but it is a constant in my life.

For me, it is apart of living with fibromyalgia.

Fibromyalgia is so much apart of my life that I have a nickname for her, Fibro, just like I call my husband Papa Bear or my daughter Pumkin or Peaches or Baby Girl. I don’t have the affection for Fibro like I do for my family, but the thing it has in common is that it is just as much apart of me as they are – it is always here, even when I wish it would go visit somewhere else.

Fibromyalgia affects different people differently. For me, when Fibro is at full flare up, I am essentially immobile. To walk from the couch that becomes my marked territory during these days to the bathroom, a whole ten feet, tears are in my eyes and I am crying because it hurts to even walk. This isn’t an exaggeration. Every step I take causes a shooting, burning, and electric pain to course up my legs from the time that my foot lands on the floor to take a step until I attempt the next step with my other foot.

There have been times when I have walked and my legs completely give out from under me and I fall. This is especially inconvenient when you are out in public and you fall down hard on the cement. This also leads to a plethora of fire trucks and EMS trucks being dispatched to your location, to make sure you are ok, and you have to look at them, humiliation on your face, and tell them that you are just fine, that your legs just gave out for a minute and you will be ok.

For me, Fibro means planning my days and activites on a day-to-day basis — needing to know exactly how i am going to feel that day. It also means not being able to work outside of the home — I obviously can’t get a labor job (although I LOVE labor jobs), sitting for extended period of times causes my tail bone great pain, sometimes my arms hurt so much that lifting them is nearly impossibly, and then there is that whole walking thing. This means that our family’s survival lays firmly on the hands of my husband, who although he has a law degree, hasn’t been able to find a regular job. So, on top of the pain that I feel, I have a whole hell of a lot of guilt, too.

Aside from the pain with my legs and hips, it is rare day when I am not plagued with a headache. I pop Advil and Aleve like it is candy. I lay down at night and I can feel my head throb. At times I ask my husband if he thinks that I have a brain tumor or if you thinks the thing that will get me is a brain aneurysm. I know it is all apart of the Fibro, but I worry. A. Lot. I also experience non-cardiac chest pain, which is good when you want to go out and live a normal life with your girlfriends. The looks you get are horrifying, though you know they aren’t horrified by you, but worried about what this means and what they should do.

I am thirty-two years old. I should be going hiking. I should be out wandering around this city.

Instead, I am living in pain almost every single day. And nothing makes the pain go away, it just fades into the background and pops up at the most unappropriate times.

Oh, and if my words get confused, or I am having difficulty understanding something that you say, it isn’t because I am a thick person. It’s because “the fog” and memory loss comes with Fibro too.

I went to the Krewe of Muses parade last night with Cleo. I had been told by a variety of people that this was THEE parade to go to and I would love it. All day, I rested, suffering from foot and leg pain, hoping that staying off my feet and taking a nap may dull it just enough. I forced my body to go, even though it was begging to just stay at home. A few hours later, after I arrived safely home, I could hardly walk. The pain was horrible. And here I am, trying to get the pain to a level that I can do it all over again tonight for the two parades rolling. Tonight, luckily, my husband is home so I won’t be doing this all on my own. Thank. God.

It’s hard, being 32 and experiencing this level of pain. It’s harder being a mom and not being able to take my daughter to do everything I want to because I am afraid of what will happen or the pain is just to much or my husband happens to be working that day. It’s hard not beating yourself up. We would be in a much better place financially if I didn’t have Fibro. We would have a much more active life. It’s hard not thinking that your husband deserves much more than a woman that is broken, him having to play caregiver some days.

A day with fibromyalgia is not a fun day. But it is a day. And at least I have one more day. Alone or not, I have one more day.

You know what I think is fantastic? I think that it is fantastic that for social studies this week, we can do a week worth of lessons on Mardi Gras. I think it is even more fantastic that going to parades tonight, MY FIRST EVER, serves as a field trip for Social Studies. We have learned the history of Mardi Gras so far this week, along with traditions, symbols, and vocabulary. We will be making King Cakes and shoe box floats. And yesterday we went and got our costumes for Mardi Gras Day! Well, Cleo and I did. My husband couldn’t find a masculine plain white mask. He won’t tell me whether he is going as Jason or Mike Myers (am not a horror girl so I have no clue who anyone is except Freddy Kruger), a mime, or some guy wearing a white mask 🙂

It is amazing to me the difference that I am seeing in my daughter. She is now sleeping through the night. She is smiling and laughing more. It is like all of her worries have been lifted off of her and she is a different person. Now, I realize I should have known this was going to happen as she did say going to that school was like being a paper back and having all of the air smashed out of it, but I didn’t realize, really, how deeply this was affecting her. I am really happy for her.

One of the things that I find absolutely interesting, however, is to see that she was getting A’s in math, but she is not at a third grade math level. What I find even more interesting, however is that some of the concepts that she should have learned last year in 2nd grade, where she also earned As, are concepts that she struggles with to fully understand. I find this really disheartening. Really, really disheartening.

So, back to basics we go, because I want her to understand these concepts so she can understand OTHER concepts. It’s important, even when she rolls her eyes at me and asks why in the world she has to review the stuff she already knows.

We went as far back as to telling time. She likes to do the digital thing, and now I know why, because she never fully grasped the telling of time. The concepts get jumbled in her head. I can appreciate this, I am 32 and cannot tell my left hand from my right. It’s the little quirks that make us, right? BUT, telling time is definitely essential because not everywhere she goes will there be a digital clock. Everywhere I go, however, I can lift my hand and find which side makes the L 🙂

Here are two poems that I had Cleo write down:

The Clock Poem

I’m in the clock crew and I’m okay!
I tick all night and I tick all day.

I’ve got two hands, I’m having a ball,
Because I’ve got no arms at all!

My big hand can move sixty minutes in one hour,
I’m the one with the strength and power.

My small hand isn’t quite as fast.
If they were in a race, it would come last!

It takes so long just to get around (12 hours you know),
It’s careful, small, and slow.

Now meet my friends that help me tick-tock,
Half past, quarter past, quarter to and o’clock.

Clock Song

(to the tune of “The Wheels on the Bus”)

The hands on the clock go round and round,
Round and round, round and round.
The hands on the clock go round and round.
To tell us the time.

The short hand on the clock
Goes from number to number,
Number to number, number to number.
The short hand on the clock
Goes from number to number.
To tell us the time.

The long hand on the clock
Goes around by fives,
Around by fives, around by fives.
The long hand on the clock
Goes around by fives.
To tell us the minutes.

Writing these down seemed to do the trick for her!

I am sending off my application for a homeschooling group in the area. They do a lot of wonderful things and really provide an outstanding social environment for the children. Cleo is an old woman in a child’s body. She has been through a lot of rough stuff. I want her to have kids to just be kids with, no matter the age. She needs to learn to like to get dirty and play in the mud and have fun! So that is the next challenge I am tackling.

All in all, though, the decision to homeschool has been a good one. We are all much more relaxed – Cleo not suffering from being the odd white girl out and some of the harassment that goes with that, me not worrying about Cleo all of the time.